19 May Fossell Family
Grateful for Love, Support, and Sense of Community
In July of 2019, my husband, Spenser, and I welcomed the perfect addition to our growing family. Luke was a perfectly healthy baby boy who instantly added so much joy to our lives. Things changed, however, when Luke was just 10 days old because his heart failed. Sometime in Luke’s very short, normal life, he contracted a common virus, the enterovirus. It should have caused simple cold symptoms but instead it attacked his heart, causing viral myocarditis. We were rushed from the pediatrician’s office with seemingly minor symptoms of poor feeding and a change in breathing to the emergency room.
As a pediatric oncology nurse, I have been with parents as they receive devastating news about their children. I’ve seen firsthand the shock on their faces as they look over at their child in a hospital bed who just received a difficult diagnosis, but I had never expected to be in shoes similar to theirs. And I can attest to the fact that devastating doesn’t even begin to describe the feeling that you get when you are told your baby is sick.
In the emergency room our lives changed forever as it was determined that Luke’s heart was not functioning properly and emergency transport to MUSC (Medical University of South Carolina), in Charleston, was arranged. By the time Luke arrived at MUSC, he was fighting for his life. We were later told that Luke’s heart function was estimated to be at 9 percent and that anything less than 12 percent is incompatible with life.
The virus caused so much damage to Luke’s heart that he had to be put on a life support machine, called ECMO (extracorporeal membrane oxygenation). While on ECMO, Luke’s heart was able to rest so that it could try to recover. However, despite the efforts of every doctor and nurse that crossed Luke’s path, he was in heart failure and was quickly placed at the top of the heart transplant list.
After 12.5 days on life support, Luke decided to show everyone just how strong he was, and his heart started to show the smallest signs of improvement. And after 22 days, we were finally able to hold him again.
Luke’s heart continued to make small improvements, and he was discharged home with a special IV line for medications. After a few months, Luke’s IV line was removed, he had surgery to close a hole in his heart and he had a feeding tube to help with his weight gain.
Ronald McDonald House Charities of Charleston was our “home-away-from-home” for 49 days. The generous group of volunteers and donors that help run the House provided a place for us to shower and sleep, meals to eat and a place to retreat to when we needed a quiet place to think. And most importantly, RMHC Charleston provided a place where we could converse with other families who were going through scary situations just like we were. The other families helped us realize we weren’t in this alone and we not only had our family and friends back home supporting us, but we also had a whole local community that was ready to help fight and pray for our baby boy.
Today, Luke is still considered to be in heart failure and is still on the heart transplant list, but he is stable on the seven medications he takes every day.
—Karoline Fossell